Thursday, August 18, 2016

Persistence of Hope, Persistence and Hope

We must free ourselves of the hope that the seas will ever rest. We must learn to sail in high winds.– Aristotle Onassis

Of late I’ve been navigating choppy waters, my physical problems becoming ever more pronounced and complicated, the progression of my disease along with its attendant disabilities charging ahead relentlessly. At this stage of the game I’m fully aware that there are no easy answers forthcoming. In addition to my ever-increasing crippling neurologic deficits, my highly dysfunctional endocrine system continues to defy explanation and remedy, and – as if these previous two beasties weren’t enough – a hideously painful degenerative bone disease called avascular necrosis has shattered both of my hips and shoulders, a condition which exponentially decreases my already gutted quality of life. The kicker is that the avascular necrosis is a rare side effect from the high doses of IV steroids I was given early on in my MS career in attempts to forestall the progression of the disease, and I was probably all the more susceptible to the condition due to my then largely misunderstood endocrine problems. This tangled web of maladies seems symbiotic. Each multiplies the problems caused by the others, forming a devilish trio that has me directly in its sites.

Still, even as the body flounders my spirit soldiers on, admittedly bowed but still unbroken. Though on an intellectual level I’ve long recognized the ruinous damage that can be wrought by progressive MS, I honestly never imagined or expected that I’d reach the level of decrepitude at which I now find myself. Given my extensive laundry list of failed and failing body parts, at this point there are moments when I realize how easy it would be to simply throw in the towel. Instead, I choose to continue the fight, and even in the midst of my ongoing crises of spirit and body, I can’t help but wonder, why? What is the nature of the spark within that steadfastly refuses to be doused?

When I was a little boy I had great fun rummaging through piles of old family photos with my grandmother, visual relics haphazardly collected in a variety of well-worn boxes stored up in her bedroom closet. It seemed there was a story attached to each image, and I delighted in seeing my adult relatives as their much younger selves in long ago moments forever frozen in time. I knew most of the people in the pictures, but there were of course photos of people I had never met; people who had died, old friends who had drifted away, or folks who had otherwise been lost to time.

Among the oldest photos in this treasure trove were yellowed, cracked images of my European ancestors who hadn’t migrated to the United States at the end of the 19th century. I remember staring at these pictures especially intently, and I vividly recall seeing one small boy with whom I bore a striking resemblance. Because of this resemblance I felt a strong bond with this mysterious person, so distant from me in time and place. As a young boy I couldn’t help but be mesmerized by this reflection of myself in a photo more than half a century old.

When I first saw these ancient photos of my ancestors I was quite young, maybe five years old, and when I asked what happened to the people in them my queries were always met with a strange silence. When I asked again just a few years later, though, I was finally told that those who had lived long enough to see the outbreak of World War II had all been murdered, victims of the Nazi Holocaust. Naturally, this news had a profound effect on me. Though I don’t think the message was ever explicitly communicated, I knew in my bones that part of these people still lived in me, their blood running through my veins. As I grew older I came to feel that my very existence somehow defied the horrors that had been visited upon them, and that my life represented a victory over those who had inflicted unthinkable evils on my long lost relatives.

I was brought up with virtually no religious training, and frankly don’t have much use for organized religion, but I do culturally identify quite strongly with my Jewish heritage. Early on I developed a keen interest in the Holocaust. As I learned more and more about the realities of camps like Auschwitz, Treblinka, and Sobibor, I often wondered how anybody could have survived the raging inferno of daily life in those malevolent places, the level of depravity inflicted upon those imprisoned within them beyond description by the words of any language. Some inmates survived years in those camps, month after month spent subjected to endless horror. What is it that resides within the human spirit that keeps alive the will to live, to make it through just one more day despite being trapped in a world in which wholesale torture and murder are rendered banal? The atrocities inflicted upon these people and to which they bore daily witness defy understanding in any rational sense, and yet the sheer determination to live stood strong.

When I first started my career in TV and video production I was living in South Florida, then home to more Holocaust survivors than any place other than Israel. In one of those odd coincidences that mark the path of life, one of my first assignments as a Producer at a local cable company was to help document the testimony of survivors by recording their stories on videotape. My role was to man the video control room of our studio, choosing between camera angles using a device called a switcher while on our soundstage a professional interviewer led each survivor through their narrative, parts of which many of the survivors had never before spoken a word.

Though I participated in at least a dozen of these interviews, the experience was always emotionally wracking. In each instance an elderly grandmother or grandfather would arrive at the facility, by all appearances just like every other senior citizen retired to Florida, save for the numbers invariably tattooed on the forearms. Each interview started off rather routinely, the survivors telling tales of everyday life with their families in small towns or big cities located all over Europe and Russia. Soon though their stories took a dark turn, and out of the mouths of these sweet old people poured forth depraved accounts of heartbreak and cruelty that left all who heard them at first aghast and then in tears.

The experiences recounted included first hand reports of babies ripped from the arms of their mothers and killed before their eyes, friends expiring in boxcars so packed that there was no room for them to fall, and parents calming toddlers even as they were led to the gas chambers. One elegant lady lost all semblance of composure as she told of being shot and dumped into a mass grave, only to survive and crawl out from under a tangle of corpses when night fell. Many told of the heroism of the Gentiles that tried to save them, beacons of light shining through the some of the darkest hours civilization has ever known.

When asked how and why they were able to endure their ordeals from one day to the next, even in the most desperate of times when thoughts of liberation and freedom seemed folly, practically every one of the survivors answered that their primary reason for clinging to life was the burning hope that at least one person survive to bear witness to what happened, so that the millions of dead would not have died in vain and that mankind would never forget and let it happen again. Thus, the sheer act of living became one of rebellion, a blow struck for humanity against a world gone mad.

Now, to be sure, I am not comparing my own predicament to that of an inmate of Auschwitz in 1944, except for perhaps one tiny commonality. In the face of a daunting odds the embers of hope stay lit, even if only in defiance of a state of affairs that on some days seems without resolve. Despite the ravages of my illness and the improbability of my finding anything approaching a cure, something within simply refuses to accept my predicament but must instead fight and keep searching for answers. I am acutely aware that even if my neurologic disease were to suddenly relent I’d still be left with an endocrine system so broken as to be disabling in its own right, and that even if my endocrine issues were then miraculously stabilized I’d need to have my hips and shoulders replaced before I could leave my wheelchair. I’m not a rainbows and unicorns type of guy, but I am an obstinate SOB, and I’m not going down without a brawl.

Since the day of my diagnosis I resolved to face my illness in all of its stark reality. I fully understand that the odds of my being cured are next to nil, but if the medical geniuses could at the very least get me back to where I was five or six years ago when I was regularly out and about terrorizing pedestrians on the streets of New York in my speeding wheelchair, I’d be ecstatic. Even this attenuated wish is likely a stretch, but when my mood turns dark I think of that long-ago child in the pictures from my grandmother’s closet and determine to try to honor those whose blood runs through my veins. I am but a speck on the arc of time, my tribulations worthy of not even a footnote in the history of human suffering. I find this awareness of my own insignificance oddly comforting, a reminder that no person transcends the unyielding torrent of time. I long ago resolved to never let hope eclipse reason, yet despite the twisted knot of crippling ailments that may stack the odds against me, the defiant spark within still burns. Hope and reason are not mutually exclusive; in fact, each balances the other, combining to form a force capable of holding steady even in the roughest of seas.

A note to my fellow MSers: please let me emphasize that my situation is fairly unique in its complexities, a web of rare conditions that seem to feed off of each other. Thirteen years after my initial diagnosis, my doctors are still not even sure that my neurologic disease is MS. As I’ve written before on these pages, my neurologist and I have agreed that in my case PPMS stands for The Peculiar Paralysis of Marc Stecker. Don’t let the details of my situation dishearten you about the prospects of your own. Given the ever accelerating pace of MS research and the advances being made in laboratories around the world, MS patients have now more than ever very tangible reasons for hope. Current treatments have demonstrated in trial after trial that they can positively impact the disease course for many if not most patients, and emerging and experimental therapies now being tested provide the tantalizing promise of completely halting the disease and even repairing damage already done. At long last progressive MS is finally taking its turn as the focus of MS research, it's many mysteries slowly becoming untangled. Of course, for patients suffering from MS answers cannot come fast enough. Although there’s no denying MS remains a terrible beast, there are now more reasons than ever to have faith that this beast can and will be tamed.

43 comments:

I have another MS friend with Avascular Necrosis, also from steroid use over the years. When you profile when quiet I did start to worry, but we all understand you can't blog as much as I expect you'd like. We still love your blogs when they come about

Fantastic piece, you leave me speechless. In awe of your strength. I can relate to having a strong, deep connection to past generations.Thank you Marc for continuing to share your journey with us. It is quite an honour to read your blog.

MS is difficult enough without the multiple dx's, I have secondary adrenal iinsufficientcy as well which can be difficult to untangle which is causing what symptom I have 2 other dx's as well and I had the same attitude about facing my illness head on from the beginning. Maybe it's part of why we are still here and fighting for some quality of life for ourselves and others.

Marc,Thank you for your core to continue on and you literary brilliance to help us glimpse at your life. As usual you inspire me.One day we could discuss all of this BS over a celestial beer.Please continue what you are doing, you really do help!

Marc,Thank you for your core to continue on and you literary brilliance to help us glimpse at your life. As usual you inspire me.One day we could discuss all of this BS over a celestial beer.Please continue what you are doing, you really do help!

Well Marc, as I was reading your post I was reminded about a book that I read, pre MS days, that grabbed me as an extremely profound approach on dealing with life's unpredictable challenges. Viktor Frankl wrote " Mans Search for Meaning"an account of his surviving a stint in Auschwitz and how the body can be broken, but the mind has the ability to create ways of dealing with the most challenging circumstances. I reference back to this book on many occasions, when need be, and I think you have a little Viktor in you coursing through your veins.Mosaltof

Marc, I don't often comment to your posts. Do you know why? Because after reading them, I'm so blown away by your profound honesty, vulnerability and magical writing style that I'm always left speechless. I'll try today, because you've exceeded what I thought was the best messaging. You touched me deeply, and I believe all of us with MS, in ways that I don't know you even realize. Thank you for being the hero that you are. Thank you for putting into words what can't be spoken. Thank you for translating emotions that can't be expressed into tangible truths that are common to this community. You are a light that shines into all of our lives. I hope you feel the waves of gratitude. Wishing you unending love and miracles.

I've been checking and checking - so happy to see the new post. It was beautiful and insightful as always. I find my own insignificance oddly comforting as well. I was never religious but always felt most a part of higher power when in the mountains or at the ocean - they go on forever. My favorite part of this post though is your thoughtfulness at the end, your concern at the end of your story of persistent hope, of diminishing someone else's hope. I'm going to lift a thought from E.B. White here and say it isn't often that someone comes along who is a true friend and a good writer. You are both.

When I was a small child, I asked a priest, " Why did God make suffering in the world?" He thought a moment and said, "There is purpose in suffering, but you must find it." You most certainly have found your purpose. Thank you Marc.

"The world breaks everyone and afterward some are strong at the broken places"- I just came across this quote from Hemingway. I want to share it with you, Marc, because it goes right to your resilience and transformative spirit and will to live. You eloquently share this gift with your readers and touch us in powerful and profound ways. Your resilience is infectious and mutes the voices that want to pack it in.keep it going, brother.

I,too, know that the chances of improving are basically nil, and that my rate of decline will continue to accelerate. What's keeping me going now is that I have a new granddaughter, my daughter is back in the country, and my son will be soon back from China. There are still things to live for a while longer.

I am astonished by your resolve. You are an extraordinary person. I almost said that you had left me speechless. Instead, I have been so moved by this remarkable post that I wrote my first poem in a year.

As always, your words have a keen way of stopping time. You are still a producer ....now of perspective, reflection, fierceness. If only you knew how far reaching and impactful your words are. We are cosmically blessed by your writings. In HS, I took Consciousness of Man elective where our Jewish teacher dissected Rolling Stones Sympathy for the Devil as a means of explaining the evilness that was the Holocaust. Thank you, my MS teacher for stirring up this enlightenment

I gotta tell you. My teenage son and I look for you on the streets of Manhattan with your wheelchair. We look for cutouts and places that aren't easy for people with disabilies. You are forever changing minds with your blog. Thank you.

Are you actually stuck indoors all the time now? That's hard to imagine for a New Yorker who gets off on city life, or used to. What do you do when your wife is home? Are you able to go out? I'm very glad your will to keep on keeping on is so strong. Hope there's enough to distract you when you need to be distracted from the nasties. All the best and thanks.

Thanks so much to everyone who commented, the response to this post has been truly overwhelming. It touches me deeply to know that my words are read by so many, and that I've helped some of you deal with this disease, if even only in some tiny way. I wish I had the time and stamina to reply to each comment individually, unfortunately, I just don't seem to have the energy these days. Hope you understand.

Please know that although my condition has indeed limited my ability to get out and about as much as I used to, or as much as I'd like to, I still find ways to keep myself occupied. Can't say it isn't frustrating to have all of NYC right outside my door and no longer be able to fully embrace it, though. MS, the thief that never stops robbing…

a remarkable story, both yours and your ancestors. and i appreciate your closing disclaimer. years ago, when my daughter was sick pre-heart transplant, i was part of a men's group that i often dominated with my woes and fears. other men would comment that their concerns seemed so unimportant in comparison to mine. i reminded them that their woes, fears, etc., were no less important than mine. still, i do read of your trials and take heart in your remarkable spirit. thank you for your continued honesty.

Marc your piece moved me to comment for the first time. I have been fighting secondary progressive MS since 2012. When I was diagnosed wth multiple myeloma in 2014 I found myself wheelchair bound due to spinal fractures compressing the nerve. We had high hopes that a stem cell transplant would stop the MS progression as well as keep the myeloma at bay. The MS progression was slowed for a while but has returned. Thankfully the myeloma is in remission and I've graduated to a walker for mobility. The intertwined nature of multiple diseases leads me to hypothesize that both are somehow related but no one can put it all together. Both of my specialists are great but siloed in their own specialties. Now I am navigating the financial reality of Medicare at a young age but thankful to be alive and able to walk assisted. My sincere prayers an thoughts to you and I speak words of hope and healing with answers to your issues! Bartoli

Reading how you craft words gives me a similar feeling as hearing Aretha sing. When reading this essay I think of Victor Frankl and have found strength and finding a greater meaning for this suffering. I have found peace and a greater meaning. Another book, Beyond The Ashes helped to reinforce these Truths. I grew up in a secular Jewish home hearing stories over my great aunt's sewing machine (she had worked in the sweatshops to bring her family over). No question our determination is in our DNA.

Thank you for your craft and your heart. Both are deepening over the many years I've been following you. Aliyah

Yep, you probably interviewed many of my grandparents friends back in South Florida. They were survivors and I often think of their resolve to live and what they were able to do find a way out of that hell and make lives for themselves. They wouldn't discuss their stories with us growing up and just yesterday I told a friend that it is my responsibility to find out as much as I can and to speak on their behalf. When we're having bad MS days here or tough times in general, I sometimes close my eyes and think of my grandparents and what they overcame. I remember the box of photos too and never realized that everyone's grandparents didn't have numbers tattooed on their arms. All of your posts are poignant, real, and inspiring. This one hits a nerve and is just a superb reminder of the meaning of "survivor". That's you, my friend I've never met but one I feel I've known all my life. If I could wish it away for you....

Hello Marc I have been away from your blog. Great read..............lots of support going your way. I have recently been confirmed with LYME. PPMS first then LYME. I have deafness commencing in left ear and vestibullar damage in Right ear........suffer with dizziness, ataxia and problems with depth perception. I was told it was anxiety related? IT HAS BEEN QUITE THE JOURNEY, 30 years. I do try to be grateful and this has been a learning curve.

Hello Marc, I have always felt so in awe of what you write and too intimidated to respond. Today I had to. Just know how grateful we are for all that you give of yourself and your courage, humor, research you have done for us all, literary brilliance, determination, strength and above all your extraordinary spirit, you are truly an inspiration.

Love your writing style!Uoi don't write lime I have MS...lol I too am an MSer , since 06....10 yeats now.Great to hear from a man with MS, not to many get out and come to the meetings or blog....keep hotrodding the chair and blogging.john

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Regretfully, due to the high volume of e-mail received and the realities of living with progressive MS, I'll no longer be able to respond to all e-mails sent. I do read each note, and will do my best to answer as many messages as I can.

About Me

I'm Marc, a 53-year-old male, living in New York City with my lovely and wonderful wife Karen. Diagnosed with Primary Progressive Multiple Sclerosis in March of 2003, I now require a wheelchair to get around the city. I like to drive the wheelchair at full speed, thus the moniker "Wheelchair Kamikaze". I've managed to rig a camera to my chair, so I'm able to take videos and still photos from the unique vantage point of a wheelchair, which I intend to post here.
Before getting sick, I was the Director of DVD Production for one of the major international music companies. Yes, I was once a member of the Evil Empire...
Prior to my enlistment in the Evil Empire, I worked as a video producer and editor.
I grew up in New York City, and spent the 1980s in Boston (college and postcollege rock 'n roll craziness). During the 1990s, I lived in South Florida, until I woke up one morning and realized I was living in South Florida, came to my senses, and moved back to New York.
I hope you like my blog...